Monday, April 18, 2011

So Exhausted, But So Worth It...

Let me begin by telling you a bit about my crazy schedule from yesterday leading in to today. I woke up at 8am yesterday morning. (Thanks to Nathan letting me sleep in that late!)Mark, Nathan, and I ran errands, to include going to Target and purchasing half of the store... I LOVE Target! :o) When we got home from all our running around we were all tired, so we all napped. I slept from about 3:15pm to 4:30pm, normally I wouldn't complain about that, however, it's never a good thing for me to sleep that early in the day on Sunday, as I have to go in to work at 10:00pm Sunday night until 6:30am Monday morning. Usually, I try not to lay down until 4ish, and sleep until 8:30pm. It's still not a lot of sleep, but it's hard to sleep much longer than that as it's the only night of the week I work overnight. So basically, by the time I left work this morning at 6:30am I'd been up 22.5 hours.

When I arrived home this morning at 7am, Nathan was still asleep, so I quickly changed clothes and snuggled up on the couch to get quick nap in before he woke. That lasted about 30 minutes. Nathan and I played until 9:45am when it was finally his nap time. (Thank goodness for morning naptime!) He had consumed nine ounces of EleCare by this point! I was so happy to be off to such a good start today! We both napped until 12pm. :o) When Nathan got up, he drank six more ounces of his EleCare! WOW! I thought, 15 ounces and it's barely lunchtime! So, again, we played and read books, then I decided I've got to get myself together to run a few errands before too much more of the day got away from me! It was near 1:30pm when I was finally decent enough to go out in public, I decided to offer Nathan some more EleCare before heading out, and he drank four more ounces, plus and entire six ounce jar of pears! I feel like I've got my old Nathan back along with his appetite too, I thought to myself! So we go out and about and return home around 3:30pm, how convenient... it's afternoon nap time! Nathan takes one more ounce of his EleCare before laying down, a bit discouraging after how he drank this morning, but I reminded myself that one ounce at a time all adds up. I slept until 4:30pm when Mark called to tell me he was on the way home from work. I quickly prepped some things for dinner before waking Nathan up at 5pm. He drank 3 more ounces and ate 1/2 jar of pears. At 6:05pm, Nathan had 2 more ounces, and right before bed he ate the remaining 1/2 of his jar of pears.

Nathan's total for the day at this point was 25 ounces and 2 jars of pears. I was happy about this, but I began having second thoughts of should we do a 7oz. feeding over night tonight? He really is supposed to have a total of 32oz. of his EleCare through out the day. Was it wrong of me to be so happy about him drinking so well yesterday (26oz.) and not give him the remaining 6oz. while he slept, justifying it because he had 200 calories worth of pears that day also? So tonight, even knowing he had, again, 2 jars of pears totaling an additional 200 calories, I decided... he needs to hit his 32oz. of EleCare for the day, I will give him a feeding of 7 more ounces over 4 hours tonight. So we put Nathan down at 7pm, and he's wide awake... I decided to let him play in his crib for a bit and fall asleep before hooking him up, as the tubing connected to the feeding pump on the IV pole has become somewhat of a fun thing for him to play with, to the point of pulling the IV pole over. Fun for Nathan, obnoxious for mommy and daddy. All I can think about it crawling in the bed and going to sleep, but alas I decided to work on laundry while waiting for Nathan to fall asleep. At 7:45pm, he was finally quiet. (He had been having full on conversations with his stuffed animals up until that point.) I go in his room to find him lying down, but still wide awake, I decided to go ahead and hook him up and start his feeding because this mama was tired and ready for bed herself! Needless to say, it was a bad idea... I fought with him and the IV pole and the pump alarming because he wouldn't stop playing with the tubing... at 8:30pm I turned it off and said heck with the last 7 ounces today! It's not worth this struggle tonight being as exhausted as I was. So I go to bed. That lasted all of 5 minutes before Nathan began crying. So I got up and took him downstairs, I thought, maybe he's hungry...hmm.. how ironic, I'd been fighting to feed him via his NG tube for the past hour almost and he was going to have nothing to do with it. So we go downstairs and I offer him his cup... he eagerly drinks 5 more ounces!! Yes, that's right... Nathan drank 30 ounces of his EleCare and ate two jars of pears today!

We are still downstairs 45 minutes later so he could play a bit more and I could write this horrifically long blog post. He just rubbed his eyes, better get him back to bed, and I'm going to be right behind him! Oh yeah... and HECK with those last two ounces for today! :o)

I'll take a day with no rest after being awake for 22.5 hours if it means Nathan drinks 30 ounces of EleCare in one day for sure!

Nathan Daniel

Three years old!

What Is an Eosinophilic Disorder?

Eosinophilic gastorintestinal disorders (EGID) are complicated digestive system disorders in which eosinophils, a type of white blood cell, are found in above-normal amounts in one or more specific places in the digestive system and/or the blood.

When the body wants to attack a substance, such as an allergy-triggering food or airborne allergen, eosinophils respond by moving into the area and releasing a variety of toxins. However, when the body produces too many eosinophils, they can cause chronic inflammation, resulting in tissue damage.

How it All Began...

Nathan was a happy and healthy baby boy from the moment he was born. With the exception of many ear infections one after the other from about 4 months of age. Nathan got tubes placed in his ears on November 15, 2011 when he was 9 months old. Finally, we thought, doctors visits and antibiotics every 10 days back to back is over!

His ears were doing great and we were so happy for that, but this is when the daily vomiting began. At first it was once a day, until it progressed to every time he ate and everything he ate. We took him to the pediatrician many times and were told, "he's just got a bug". Many co-pays later our pediatrician suggested we have an upper GI barium swallow done. Mark and I were all for it, we thought, this is it, we are going to have an answer! It showed a pyelorospasm in Nathan's stomach. The pediatrician switched his formula to Alimentum and it was like magic, Nathan was keeping it and his food down again!

We kept Nathan on the Alimentum until January 1, 2011 when we switched him to organic whole milk. Things were wonderful on this.... until daycare called me on Valentine's Day. Nathan had thrown up twice, and I had to go pick him up. At first, I thought... he's got a bug, it's been going around and that's all it is. Four days later, Nathan was still vomiting, I took him to the pediatrician and his advice was to switch him back to the Alimentum for about a week and then try soy milk. Again, the Alimentum was working wonders and the soy was too... for only 2 weeks. Then it began all over again. We switched him back to the Alimentum and to my worst fear... he could not tolerate that anymore either! After a midnight visit to the Emergency Room, and the very next day a visit to KidMed for dehydration, Nathan was able to tolerate Pedialyte only, and he lived off of that until Wednesday, March 16th, when we finally got to see a pediatric GI doctor, Ted Williams.

Dr. Williams, suggested right off the bat that we switch him to an elemental diet, of EleCare, and schedule a upper endoscopy for the following Monday to check for Eosinophilic Esophagitis. What a long weekend it was waiting for Monday to arrive. But it finally came and Nathan did great during the procedure. Then it was more waiting for the biopsy results. Thursday, March 24th the results were in.